The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases

Part 1

1. What are mast cells?

2. What is mast cell disease?

Part 2

3. What causes mast cell disease?

4. Is mast cell disease heritable?

5. Can mast cell disease be cured?

Part 3

6. What symptoms does mast cell disease cause?

7. Why are skin and GI symptoms so common?

Part 4

8. Why are symptoms not the same for everyone?

9. Why do symptoms change over time?

Part 5

10. How is mast cell disease diagnosed?

11. What kind of doctor diagnoses mast cell disease? Can any doctor order these tests?

Part 6

12. What do these blood and urine tests look for?

Part 7

13. What do these biopsies test for?

Part 8

14. Are there special instructions for the tests to diagnose mast cell disease?

Part 9

15. How is mast cell disease treated?

16. Do I have to take medication if I feel okay?

Part 10

17. Does mast cell disease impact mood, anxiety, and depression?

18. Are medications for depression, anxiety or other psychiatric conditions used in mast cell patients?

Part 11

19. How do other conditions affect mast cell disease?

Part 12

20. Why do a lot of mast cell patients get intravenous (IV) fluids?

Part 13

21. Why do people care so much about diagnostic criteria?

Part 14

22. Is MCAS an early form of SM?

Part 15

23. Is mast cell disease progressive?

Part 16

24. What is degranulation?

Part 17

25. How do I know what I will react to?

Part 18

27. Can mast cell patients travel? Can they fly?

Part 19

28. Why are so many mast cell patients anemic?

Part 20

29. Why do I swell up when I have a reaction? Where does the fluid come from and where does it go?

Part 21

30. Why does my skin get red and itchy?

Part 22

31. Does mast cell disease cause cognitive issues?

Part 23

32. Is mast cell activation the same as mast cell activation syndrome?

Part 24

The questions I have already answered in other posts

Part 25

33. What is the difference between primary and secondary disorders? How do you know if your disorder is primary or secondary?

Part 26

34. What are the differences between the forms of systemic mastocytosis?

Part 27

35. Why are there different sets of criteria for mast cell activation syndrome? What are the differences between them?

Part 28

36. Is MCAS less serious than SM?

Part 29

37. What is the difference between mast cell activation syndrome, mast cell activation disorder, and mast cell activation disease?

Part 30

38. What is the difference between the forms of cutaneous mastocytosis?

Part 31

39. How are mast cell disease, Ehlers Danlos Syndrome and POTS connected? (Part One)

Part 32

39. How are mast cell disease, Ehlers Danlos Syndrome and POTS connected? (Part Two)

Part 33

40. What is mastocytosis of childhood? Is mast cell disease different from children than adults?

Part 34

41. Can my mast cell disease go away? Will it ever not be a problem?

Part 35

42. How is anaphylaxis related to mast cell disease? How do I know when to use my epipen?

Part 36

43. What is a rebound reaction?

Part 37

44. What is a myeloproliferative neoplasm? Is that what mast cell disease is?

Part 38

45. Is mast cell disease autoimmune?

Part 39

46. What does it mean to be a “leaker” or “shocker”?

47. What does “sense of impending doom” mean?

48. Why do I taste metal when I’m having a bad reaction or anaphylaxis?

Part 40

49. What is the relationship between FPIES and MCAS?

Part 41

50. How does mast cell disease affect hearing?

Part 42

51. What is the difference between mast cell activation syndrome and histamine intolerance?

Part 43

52. Is it true that it can take up to six bone marrow biopsies to diagnose systemic mastocytosis?

Part 44

53. How do I get effective care from providers that don’t know anything about mast cell disease?

Part 45

54. How does mast cell disease affect clotting?

55. How many people have mast cell disease?

Part 46

56. Why do I react every time I eat?

57. Do I have to go to the hospital every time I use an epipen?

Part 47

58. What is mastocytic enterocolitis?

Part 48

59. Is systemic mastocytosis a form of cancer? Why do some papers say the life expectancy for systemic mastocytosis is much shorter?

Part 49

60. Is anaphylaxis the same as anaphylactic shock?

61. If a tryptase level over 10.9 ng/mL is high, why is one of the criteria for systemic mastocytosis is tryptase level of 20.0 ng/mL or higher?

Part 50

62. Is it possible to become tolerant of a trigger again?

Part 51

63. Why do many mast cell patients gain weight? Why can’t they lose it?

Part 52

64. Why do I always have dark circles around my eyes?

65. Does mast cell disease cause hair loss?

Part 53

66. How long does it take to react to a trigger?

67. What physical things trigger mast cells?

Part 54

68. How does mast cell disease affect pregnancy?

Part 55

69. What routine monitoring should mast cell patients receive?